Giving disability a voice in Europe

Written by The Parliament Magazine on 6 November 2018 in Interviews

Interviews

By 2020 there will be an estimated 120 million people with disabilities in the EU. We must ensure that these citizens are able to live as full and independent lives as possible while maximising their capacities and potential, argues Marek Plura.

Marek Plura | Photo credit: Martin Lahousse

Why does Europe need a special day to highlight the European Day of Persons with Disabilities?

One in six EU citizens are affected by disability, yet they remain barely visible, whether at school, in the workplace or in shops. This is because many of them are deprived of access to education, culture, employment and public transport.

I believe that the level of awareness of people with disabilities, their numbers, needs, their potential and the challenges they face every day remains very low. We fail to realise that temporary or permanent disability is something that could affect any of us.

The European Day of Persons with Disabilities is an occasion for those people, and the organisations that represent them, to raise awareness of their problems, needs, expectations and ideas. This day should be dedicated to an in-depth analysis of the situation and a commitment from all stakeholders to take clearly-defined actions with results that could be measured a year from now.

What are your key priorities for implementing the European disability strategy report? Is the policy effective enough and are member states doing enough to implement it properly?

My priority is to support independent, active lives with access to education and employment as well as social and professional roles. During our work on regulations such as the European Accessibility Act or the Passengers’ Rights, there were always questions about the cost.

We must realise once and for all that Europe cannot afford to waste the potential, talent and engagement of millions of its citizens! Enabling people with disabilities to be active is an investment, while accessibility benefits all; the elderly, parents with small children, tourists with luggage - everyone.

In its Progress Report on the Implementation of the European Disability Strategy for the years 2010-2020, the European Commission estimates that by the year 2020 - less than fifteen months away - we will have 120 million people with disabilities in Europe. That is more than enough time to take well-planned, effective action with the objective of allowing this group to live lives as fully and as independently as possible while maximising their capacities and potential.

Meanwhile, the report clearly shows that people with disabilities still encounter discrimination and barriers that prevent them from benefitting from their rights and playing an active role in our society. To date, action at all levels has been insufficient to remove obstacles to education and employment.

I hope that the recommendations contained in the report prepared by Helga Stevens on the strategy’s implementation, based on consultations with organisations of people with disabilities, will be reflected in the new strategy.

The consultations and debates that I have held with various stakeholders clearly indicated that the strategy is a little-known, complex document in a language that is hard to understand. It lacks the strong legal and financial mechanisms to allow successful implementation.

One year ago, the 4th European Parliament of Persons with Disabilities, with over 800 delegates from all over Europe that overcame barriers to attend, declared its readiness to begin working on a new strategy. Unfortunately, the European Commission has not yet initiated consultations on the subject. I believe this is a missed opportunity to fully engage citizens with disabilities and help them develop a sense of ownership.

“I believe that the level of awareness of people with disabilities - their numbers, needs, their potential and the challenges they face every day - remains very low”

You are one of several high-profile MEPs with a disability; why do you believe there are no disabled European Commissioners or heads of state. Is there a political ‘glass ceiling’?

I don’t think so. The obstacles exist at a much earlier level, such as limited access to education and to social rights. Unleashing one’s intellectual and creative potential in this environment requires a lot of luck.

At the end of primary school, having had no contact with children of my age, a career counsellor asked me if I liked books. When I answered enthusiastically, he told me that I should become a bookbinder, without even considering that a disabled child could be interested in going to high school or to university.

Fortunately, I did not follow his advice, but others, when faced with similar conditions, may do so. It’s a shame to see so much unexplored potential that could be used for common good, since I believe that disability enriches one’s personality and sensitivity, as well as one’s environment.

When faced with new challenges related to disability, the parliamentary services were very helpful and cooperative in making the European Parliament a friendlier place for MEPs, employees and guests with disabilities, which I am very grateful for.

Nevertheless, I believe that competency should be the main criterion for the appointment of a commissioner, president or prime minister. – although a disability might just be an additional asset.

Considering that one in six European citizens have a disability, do you think it’s now time that the EU had a commissioner for disability rights or a dedicated EU agency?

The task of changing the lives of 120 million people with disabilities in areas ranging from diagnostics and rehabilitation to education and employment, does not necessarily belong to a single commissioner or even to a single agency.

The topic of disability should be an explicit element of the portfolios of key commissioners in the areas of education, employment, health, justice and social aid.

As a co-signatory of parliament’s written declaration on autism, is enough being done to raise awareness, and should the EU be spending more on autism research?

Autism is a complex, lifelong disorder, which affects approximately one percent of the population. Early diagnosis and intervention can allow those affected to function independently. Therefore, it is worth sharing good practices, increasing awareness and conducting studies on the causes of autism.

The health and wellbeing of citizens also has an economic dimension: 165 million Europeans currently live with a brain disorder, causing a global cost exceeding €800 billion for national health budgets. This is why I have taken up the role of ambassador of the campaign promoting the importance of neurological disorders in EU health policy.

Rare diseases are another area where actions at the European level clearly have added-value. It is estimated that more than 30 million Europeans are affected by one of 6000 rare diseases. Joint research and experience sharing are the only things capable of bringing real progress in the management of rare diseases.

Fortunately, a lot of good work is being done, for example within the framework of European Reference Networks. Their main objectives are to grant better access to diagnostics and treatment for the patients, share knowledge between specialists from different countries and establish standard clinical processes.

“Voting or standing for election is a fundamental citizen’s right, and it is the duty of the state to guarantee access. Clearly, in many cases people with disabilities require assistance to exercise this right. The lack of such assistance should be seen as a breach of Article 29 of the UN Convention”

You are backing the creation of a European network of people with dwarfism. Why is this needed and what challenges do people with dwarfism encounter?

This group needs a strong voice at the European level. While a lot of initiatives are taken to remove barriers, people of short stature are still routinely faced with challenges such as unreachable door handles, switches or ticket machines and are discriminated against on the job market. Medical knowledge on the diseases that can lead to dwarfism is also insufficient.

Is sufficient priority being given to research in how to successfully apply innovations such as AI, internet of things, virtual reality and smart homes to benefit people with disabilities?

New technologies have incredible potential for eliminating barriers linked to disability and allowing a better understanding of how people with diseases such as autism perceive the world. I had the occasion to see some wonderful solutions, which are unfortunately not yet widespread.

I believe too little attention is given to researching how modern technology can make people with disabilities more independent. Access to such technology is another important issue; although people with disabilities represent a big market, we are yet to see it attract investments that could stimulate accessibility and development.

On the one hand, it is important to help people with disabilities better understand how AI, smart homes, machine learning, the Internet of Things or VR can improve their lives. At the same time, we must also convince decision makers that such solutions should be made widely available.

It is nevertheless worth mentioning that any information and communication technology is potentially linked with a risk of isolation from reality and human interaction. I am curious to see the conclusions of the conference organised on this subject by the European Disability forum under the patronage of the Austrian Presidency on 16 November.

Almost 80 million people with disabilities live in the EU, many of whom are partially or entirely deprived of the necessary assistance to vote or stand for election (including in European elections). What is your opinion on this?

Voting or standing for election is a fundamental citizen’s right, and it is the duty of the state to guarantee access. Clearly, in many cases people with disabilities require assistance to exercise this right. The lack of such assistance should be seen as a breach of Article 29 of the UN Convention. It is worth asking the question of what exactly full access to voting means.

As well as important elements such as access to polling stations or voting remotely, materials such as party programmes, debates and websites should also be made available in different formats (such as sign language, Braille, etc.). I believe that we should do everything that we can to ensure that the 2019 elections to the European Parliament are exemplary from that perspective.

“I believe too little attention is given to researching how modern technology can make people with disabilities more independent”

Will you be standing in the upcoming European Elections in 2019, and what will be your political priorities for the campaign, in terms of both general EU policies and disability rights?

If my party is willing to put me forward as a candidate, I will stand in the 2019 European Elections with full dedication and energy. My campaign, and all my actions, will be based on my core belief that in each person there is potential that can be used for common good.

It is society’s duty to create conditions for its unleashing and development. Solidarity in society is necessary to develop such potential among the weakest. To avoid discrimination, we must base all actions affecting other human beings on respect of their dignity.

The European Union is an area of great opportunity for constructing an inclusive society, where all citizens are equally important. I want to continue my work on behalf of people with disabilities and those affected by rare diseases and brain disorders. I would also like to continue focusing on youth and their access to the labour market, as well as fostering better intergenerational communication.

The inability of employers and recruiters to understand the potential of young people entering the workforce and the way they think is as big an issue as the mismatch between education and business.

Finally, I would like to work on appreciating and managing the incredible potential of elderly people. They are the cornerstone of non-governmental organisations and charities. They are responsible citizens taking part in elections and are the driving force of local initiatives. Elderly people not only have the knowledge, but also the patience and understanding that allows them to act as valuable mentors for young employees and to support their younger families.

They are an important resource in Europe, and we must pay attention to their wellbeing and health, while humbly benefitting from what they have to offer.

My years spent in the European Parliament have taught me both how much can be done and how much still needs to be done. I know that my time is quickly running out and that I have to work hard to make sure that it does not run out before certain important and good things are accomplished.